Diagnosis

March 7, 2014

I have written this post hundreds of times in my head. Each time it feels witty and awesome, but then I go to put it on paper and I just can’t write it. I am not really sharing my thoughts on Facebook because there are just too many readers there. My daughter is there, and I don’t know if I am ready for her to hear my raw emotions.

Some of you already know what is boiling around in my head, others not so much. The past year has been truly difficult for my family. While Sultry Husband (I just love calling him that ), started a job that he dearly loves, our personal lives have been in turmoil. We lived with family for a time, but for the past year we have been in a rental house on our own.

Just before we moved here, I noticed that one of my knuckles was swollen and it hurt as if I had bruised it somehow. I often bruise myself without thinking, so I wrote it off. A few weeks later, that finger was just not getting better. I showed it to my mom (the nurse, whom we were living with), asking her how long a bruise like that should last. She sent me to the doctors office… where the Doctor scratched his head saying that he had no idea what would cause the issue. So he sent me to a “Rheumetologist” who specializes in joint issues.

Then we moved here. I did follow up with the specialist (Dr. B), and she said it could possibly be something, but my blood tests all came back negative for any kind of arthritis, so it was probably nothing. So, she sent me home with a prescription for a large dose of Ibuprophren. A few weeks later, with still no change in the knuckle, Dr. B ordered an MRI of my hand. Afterwards, she told me that there was definitely inflamation (duh) in the knuckle, and she would like to drain it with a big needle for further testing. Ick, but ok. She also offered me a cortisone injection. Finally, the injection did something to relieve the pain and swelling that I had dealt with for months.

A few months after that, my right hand started swelling up. Back to Dr. B I went. She stated that my blood tests still came up negative for Arthritis, but once it was in two joints, it was more likely that I had Rheumatoid Arthritis. I brushed off her thoughts, saying to myself that I would be fine, and it would just go away with time. Dr. B put me on a medication that seemed to take away the symptoms, so I thought I was fine.

Fast forward to Christmas. I wanted these super cute boots for Christmas. Sultry Husband and I went shopping for them, he wrapped them up all adorable… and when I went to put them on Christmas morning, they hurt my right foot. The top of my foot had been tender for a little while, but I figured I must have dropped something on it… but now, I was losing feeling in two of my toes on my right foot. I called Dr. B. who scheduled me to come in just after the Holidays.

By the time I went in, both of my feet were so swollen that any shoes, even shoes that I knew were a size too large, hurt my feet. Dr. B did some X-rays and a full examination. She stated that this was Rheumatoid Arthritis for sure. Once it was in mirroring joints, the swelling, etc etc etc. She gave me a new medication that should take care of the issue, and put it under control.

I started the new medication, and saw an instant improvement in the swelling. However, the major side effect to the medication is that it made me so sick, I was throwing up constantly. I called Dr. B. Who stated that it was time to try a different medication. This time, a shot. Fine, I have done shots before, I can do them again and be ok.

So far no sickness, but no improvement of symptoms either. When I asked Dr. B’s nurse how long it usually takes on this medication to see relief, she mentioned to me that it could be 6 weeks or 6 months before I saw improvement. If after that time, I was still seeing swelling and pain, I should call them again so they could adjust my dose. Wow, so I put my life on hold for up to 6 months? To say I was discouraged was an understatement.

That’s the nuts and bolts of my diagnosis and the timeline leading up to it. Now, for where my head is through this whole thing. Many of you know my struggles over the years with my physical body. My left hip was finally replaced 6 years ago, and I have been pain free since then. It has been a glorious 6 years of activity. The ability to chase after my kids and actually play with them. To hike with my family and not be left behind. It all felt so wonderful. When I first got the diagnosis, Dr. B told me that I could still lead an active and happy life, I would just be dealing with RA on the side. But many people can go into full remission and never have symptoms. I still hope for that, but at first, when the pain started, I pretended to be an Ostrich and stuck my head in the sand. The symptoms wouldn’t be bad enough to slow me down, right? If the blood test was negative, it could be a misdiagnosis, right?

I have had to face this diagnosis. The symptoms are not getting better, they are getting worse. Just last night, I almost started crying at my kids literacy night, because I was on my feet with shoes on, for a whole hour. This is madness. It feels unfair that I would get another physical issue. I mean, I spent a good portion of my life in almost constant pain. Surly I deserve more than 6 years of my life without it. I know that life is not meant to be fair. I just dislike being left behind when my family wants to go hiking. I also truly hate being left behind when it comes to the fear that my feet will start to hurt in less than an hour of activity. I will continue to seek out new treatments and medications. I will continue to work with my doctor for that end result of a mostly pain free existence. But right now, well right now, I just hurt.

You know I feel for you in this, because I know what living with pain and being “left behind” is like. I can suggest incorporating ginger root and turmeric into your diet, as they are natural substances that reduce inflammation (and I have used them and they do have an effect, especially ginger). So long as you don’t overdo it, fresh ginger tastes great in a lot of things, and the flavour of turmeric can be hidden if you keep it around a quarter teaspoon. You can sprinkle it on salads or mix it in a cheese or tomato sauce. Whatever works.

Oh! One thing I don’t recommend is taking turmeric in a capsule. It doesn’t digest very well and results in some, uh, discomfort.

I like to make smoothies with frozen fruit, around 20-25 grams of ginger (which is a chunk about the size of a lid from a bottle of salad dressing — sorry about the weird comparison, but it was hard to come up with an everyday object that would give you an idea), a ¼-teaspoon of turmeric and some combination of milk/yogurt/protein powder that gives the right consistency. (You need to make sure the fruit, or some other ingredient is frozen though. Room temperature smoothies are kind of gross. You could always throw in some ice if you don’t have frozen fruit. Protein powder is optional, it’s just something we use. Milk can be dairy or non-dairy. In fact my favourite smoothie is made with frozen pineapple, coconut-flavour greek yogurt, and coconut milk.)

I know it’s been a long time – and I’m sorry I wasn’t there for you to know what was going on. I hope things are going well & that you are able to do some – even all that you wish & desire. You are an amazing woman.

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